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Friday, January 29, 2010

Holland Sucks

Not the actual country of Holland, mind you. I have nothing against it. In fact, I've never been there. From what I hear they have some lovely windmills and some over-the-top porn, but honestly that is the extent of the very limited and likely flawed knowledge I have of the place.

I'm talking about something entirely different. Most parents of so-called 'special needs' children are probably aware of what I am talking about. A very beautiful piece of writing by Emily Perl Kingsley, a former writer for the television show Sesame Street, winner of 12 Emmy Awards, and author of several children's books. This 'poem', called 'Welcome to Holland', is the author's attempt to explain what it was like to raise a child born with Down's Syndrome.

The piece wants to lead you to believe that even though you think you're life is going to turn out one way, but instead it turns out entirely different, that in order to cope and to hope and to get the most out of the experience of the life you are now living you need to embrace it, and look for all of the good things in this new place and forget about the place you THOUGHT you were actually going.

In a nutshell, the piece tells the story of a traveler, who planned and prepared all his/her life to go to Italy, and instead ends up in Holland. Differently put? When life throws a pile of lemons in your face, you need to make lemonade out of them.

But I have news for you. It isn't all that easy for us simple folk.

Yeah, here I am, busting the balls of the poem 'Welcome to Holland', something that is sure to draw the ire of many people who use that poem as a guideline to life. Why am am I doing this?

Because I have two emotions of late that are consuming me bit by bit. Sadness and anger. I seem incapable of expressing anything BUT those two things. I don't know why now as opposed to at other times. I don't know how to change it. I don't know how long it will last. I don't know if what I am experiencing is 'normal' for a 42 year old man in this situation or if I am just a Class A Jackass.

Probably the latter.

But people need updates. I realize that. The e-mail quantity tells me that. I understand it. I appreciate it. When you're mother sends you a message asking 'Are you ever going to blog again?' you realize...oh shit...some people actually DO depend on this thing for information and check it regularly. I get it, and in some way...there is some comfort there.

But, I have been resisting this blog for one very simple reason. I am so full of negativity right now it hardly seems right to come on and just bitch and bitch and bitch about any aspect of anything. ESPECIALLY when there are so many, SO many, people experiencing things FAR FAR worse than what I am going through.

Why, just yesterday, two people whose blogs I subscribe to posted updates and it had been a while for both. BOTH of these people are going through way more than me, and yet both have found a way to remain very positive despite all the crap life is throwing at them and their beautiful, innocent children.

I envy people like those two, or Ms. Kingsley, people who rise above the shitty plate they have been served and become inspirational, noble people. It really is the key to a contented life, no matter WHAT your circumstances are.

Me? I am a simple, mediocre person, and I cannot seem to rise to that level and become more than the bitter, broken, scary human being I am as I sit here writing this. Maybe, someday...that could be me, that person who is inspirational rather than a force of raw, frayed negativity.

Maybe. Someday. I hope so. But not today.

And I say that I am mediocre not to belittle myself, but it's just an admission of fact. Fame will likely not be my destiny. Nor fortune. I will probably not cure some horrible disease. I will not score the winning touchdown in the Super Bowl. I will not walk on to a stage to cheering crowds. I will not be thanking the Academy.

I will be somewhere, making my way through life as best that I can, doing things that in the Grand Scheme of The Universe in Totality (or at least Earth) will hardly be a blip on the radar. I will likely have a small, somewhat insignificant obituary on the day that I die, and very few people will even know that it has happened. My funeral will be small and not covered by all the networks.

You know the truth is I have always been fairly cool with that. As long as I had my inner circle, my family unit, my few close friends and companions. I never wanted to be anything OTHER than mediocre when it comes right down to it...and simple? I like that. The less complex my life the better.

But nothing is simple right now. Nothing. And as I watch my world coming apart around me I can find pleasure in SO very little. I can find positive in so very little. I've talked about perception before. Probably in one of the few recent blogs I bothered to write. You can look at a glass as half-full or half-empty, and much of the power you have over that is something within your own ability to influence.

A good comedian, who is in the hospital recovering from an attempted suicide once said this.

'People ask me if I am a glass half-full or a glass half-empty kind of guy. I'm a glass half-full kind of guy, no question. But what's IN the glass tastes like shit.'

And that's where I am today. I don't know where I am headed, I don't know what it is going to take to start going in the opposite direction from down. Because when you get to a point like this mentally, even good things are bad. Only a few people out there probably even understand what that means.

Clearly I need help. Clearly I'll have to spend some real time and effort trying to get that help. And clearly I will put it off for as long as I can as I am often prone to do and this thing in me will linger and get stronger.

Such is the way of things in Lillyworld.

But there are updates. Always updates.

Bennett still does not really speak at all. He still cannot communicate with us or we with him. We still play the guessing game, ala an infant, to figure out what he wants. He has a very difficult time with a lot of things. He still does not procees things like a TV show and watch a learning program or anything like that.

If you hand him a piece of finger food, he must place it on the floor, touch it with his index finger, pick it up, then put it in his mouth and eat it. He rubs the air vents for 20 minutes at a time. His fascination with wheels is remarkable. There are many times when he loses it...in a very Rain Man kind of way, where he becomes inconsolable and even hits himself.

But...he laughs, he smiles, he plays. He runs, he goes up and down the stairs very easily now. He's figuring out how to use a spoon. He can engage with a toy for quite a long period of time. He interacts with other children and people as best he can, more instinctively than intellectually.

And...he has had no seizures since his surgery. Not one. And yes, despite where I am mentally, I appreciate the HELL out of that. Tomorrow we go to participate in a Stroll for Epilepsy, a charity fundraiser for Columbus.

I swear to you, if I see a kid having a seizure I will not be able to stop the tears. Seizures, seeing them happen to a child and knowing what they do to a child...well, it's pretty much one of the most shitty things I have ever had to know in life.

Monday and Tuesday? We go back to Cleveland Clinic. He will have an MRI, meet with the Epileptologist, the Neuro-Surgeon who cut out the tumor, and the Neuro-Psychologist. An EEG will likely be in his very near future.

On Wednesday, Jennifer and I attended a preliminary meeting at Step by Step Academy, the special 'school' for children with Autism and other Developmental Delays that we have been trying to get him enrolled in. We were on a waiting list. A spot opened. He starts February 8th. Monday through Friday, from 9am until 4pm, he will have ONE ON ONE ABA Therapy. We are hoping this will be very good for him.

Why am I not screaming for joy on the mountaintop? Cause that has got to be a great thing right? Yeah, it is a great thing, but like I have said...my 'mental condition' is too fucked up right now to experience the hope or the joy for what should be, SHOULD BE, a step in a better direction.

Actually, my Mom said it best, when I had my last phone call with her to tell her that Bennett got into the school. She asked me why I didn't seem all that happy about it.

'Happy?' I said. 'Nothing really makes me happy. It's great that he got in, but I don't feel any differently today than I did yesterday. I can't get to that kind of a place.'

I struggled with trying to come up with an analogy for her, but she actually gave me a GREAT ONE. One that I will use the rest of my natural life.

'I think I understand,' she said. 'I guess it would be like me asking someone why they weren’t really happy with their nifty new prosthetic leg.'

That summed it up for me right there. Yeah, the new prosthetic leg is cool. BUT I LOST MY LEG AND AM NEVER GETTING IT BACK. Yeah, the enrollment in the special school is great, BUT MY SON HAS A DEVELOPMENTAL DISABILITY AND ODDS ARE HE WILL NEVER REALLY LIVE THE LIFE I ALWAYS DREAMED OF FOR HIM.

So, that's where we are with Bennett. I struggle with finding and latching on to the positives, that's my problem. There are positives, certainly. There are also negatives. Could be better. Could be a lot worse.

Eventually, my hope is that I'll stop being pissed off. Then things can really start looking up. For all of us.

As for Carter, poor little guy. He hasn't been in Taekwondo for two weeks. First, he pics up Strep Throat. Really zings him. He had not been sick in a long time too, but this one cooked him pretty hard. On top of that, he gets some kind of Scarlet Fever that then gives him the most awful, itchy rash...lasted for DAYS. Only now has it started to clear up.

And that, in the longest nutshell you will ever see, is what's up in Lillyworld right now. I'll try to not let it go this long again. 2.5 weeks is a long time to leave people whom I care about and who care about me and my family in the dark. I'll endeavor to pull my head from the confines of my butt a little more often.

19 comments:

Hey there. I'm Rook, a friend of MarissasBunny's dad. I've been shadow-following your story between bouts of holiday business and general business.

Its good that he's not had a single seizure since his operation! And I'm glad to see that he's moving about more. What a relief that must be.

Still, I do understand your rather dim outlook. I can't say that I'd be any better off mood wise if I were in your situation.

I'm not a mother of a child with a disability.

Hell, I'm not even a mother. I'm a twenty three year old with a tiny apartment and two dogs. I can say a million times that I sympathize, but I can truly say that I am aware that I don't "get it."

Still...

Every day is a small step forward. Some days its only an inch, others possibly a mile. I know that days when its barely progress aren't gratifying. But you're moving forward. You're a stronger person than most would be, I'm betting. Including myself. I really hope that you do eventually find a small bit of happiness to call your own.

You deserve it.

To some degree, I do know what it is like to have someone in your family with a disability. I've got a younger cousin who is your typical high-functioning Aspie, complete with OCD. While he's better today, thanks to therapy and a bit of medication, as a child he had the typical signs of autism. He didn't speak sentences until he was five, but prior to that he rarely spoke more than a word or two a day. He used to become entranced with shiny objects like crystals in chandilers. He'd become fixated on absolutely nothing for hours on end.

And the tantrums! They were the worst. He would wail and cry while laying on his stomach, and yes, often to the point of wetting himself. Just impossible to console. We used to have to blow in his face to get him to take a breath so he wouldn't pass out.

But, when he hit five or so, he started going to some therapy, taking some classes. It really did make all the difference. He still has his moments, where he'll scream and yell in a blind rage at his younger brother. But, for the most part, he's becoming pretty much your average thirteen year old boy. He plays the trumpet in band, he is part of a science club, spends hours in his room building insanely detailed, functional model cranes and bulldosers and such from K'Nex and Errecter Sets.

I'm not saying that therapy is a cure all for everyone, but it does always help to try.

And I do think you're much more than Medicore Man. You're someone that other parents can relate to. I think that is where you will make your "blip." And it isn't insignificant by any means.

-Rookhttp://aforkinthesocket.com

PS: Aww, Carter and his belly rash. Strep is terrible. That is something I can relate to. I was one of those little kids who was always catching the flavor of the week disease! Aww.

PPS: And hey, why a prosthetic leg isn't a real leg, its a leg. I'd have to say that I'd be much more grateful with a prosthetic leg than none at all. How many times have we seen those people with those cool roboty prosthetic legs running marathons?

Well, I'll be one of THOSE people and just say it: you know that this business isn't really about Bennett, right? Right? Bennett is good, Bennett is blissfully unaware of your expectations for his life. This is a chemical thing in your brain most likely caused by stuff that happened long before Bennett even arrived on the scene.

So no, you're not mediocre--you're just chemically challenged. Having a good attitute isn't doesn't make people better--really, it doesn't. They just have different chemical (or better drugs).

Oh, and for Pete's sake! Happy about special needs school? Ridiculous. I think that pleased to be given the opportunity to improve his situation is a tad more like it.

I've been guessing where you are at and now somehow glad to see it in writing. I won't try to cure you my friend. I can only hope that once Bennett gets settled in school and gets the benefits of therapy you will slowly find your peace with the situation. I can say that I have felt the stress more recently than ever in this process because we have been going through transition to pre-school and I have had to confront the reality that all of the kids in the special class are miles ahead of where we are starting. I have found peace with that and am excited about the start of school and wish it was tomorrow. I can't believe he is getting that much ABA. All we got is halfday preschool and an hour of ST and OT and a half hour of PT a week. Bet you never thought you'd find someone jealous of your situation.

I just wanted to tell you that we are at far more similar places than you think. I got to talk to my hubby today to report on just how shitty things are for Maddie right now. And I told him I posted a brief, sort of positive update but what I really wanted to post was a question to all the SN parents out there......how do you do it? How do you get to acceptance? I don't want to give up my hopes. I don't want to be where we are and I just can't see what good it will do me to accept it.

Despite how crappy things are for her, I do still have lots of hope. And for some reason I can't give all that up. Reality is just too harsh. I'm not sure exactly why I am still so positive and hopeful, but I am one of the lucky ones that just fall into that naturally. But as I said, I am going to call at some point to discuss. Unfortunately right now we sleep all day and are up all night.

But I respect where you are. I go there too, but somehow I magically get dragged back into my Pollyanna-ish hope most of the time. And I feel lucky to have that. I wish I knew how to share it.

I always worry about people who don't post for a while when they usually post daily...I have had blog folks email me and ask if I was OK. To me, it's cool that people can care so much. I'm sorry for your sadness. You are grieving and that's OK...goes with the territory. My guy is still pissed and it's been 10 years. I don't wish that on you.

Ken, we should chat soon. Maybe it's time to reconnect to your artistic dreams, which were anything but mediocre. I know you have a lot on your mind... but hey, you have a few buddies that know what you're capable of, and we're around if you need some inspiration and/or motivation.

Maybe you have a little PTSD from the whole brain surgery experience. My son has a seizure disorder and has qualified for surgery but we are going to try the ketogenic diet before considering surgery further. I know how you have to stay strong for the surgery and recovery and so maybe now you are just needing some time to recover from the shock of it all. It seems like you don't know if you're going to Holland or Italy at this time and instead are just up in the air right now. Maybe it would make you feel better to tell the people at the new school how you are so happy that their therapy will help him with his recovery and help to get him caught up and that he should be able to catch up. Best of luck.

I, for one, am grateful that you can articulate so well all that you are feeling and experiencing. I've experienced clinical depression and can tell you that, in those moments, there was no way I could've even put a name to an emotion...there was only a murky, angry fog.

I'm convinced you are going to be ok! Maybe not today, and maybe not tomorrow, but you will be ok.

What is the old adage about identifying a problem being the first step? You can do this! You will do this. You will man up and be the strong and positive dad that Bennett needs you to be. But, in the meantime, grieve, get angry, bitch and moan. Experience the emotions you are feeling and be real about it. You'll get there.

Although I always read your blog, I don’t often comment so I thought very long and hard about what to say to you. It concerns me that you seem to feel the only kind of inspiration is of the Pollyanna variety, that the only kind of “hero” is the type who finds happiness in the midst of ruin. Consider this: the Holland analogy didn’t make you feel any better or make it any easier for you to face your struggles. Are you so unique that you’re the only one who reads that account and feels that it doesn’t apply? Isn’t if far more likely that there’s a variety of things and ways in which we all find inspiration?

For those of us who are melancholic, we are filled with awe when we come across someone like the author of that poem, but it doesn’t touch us. The people I admire are those who, despite their pain, put one foot in front of the other, day in and day out. Just that action. The pain, the anger, the uncertainty, all that raw emotion threatening to boil over and consume you at any second. And yet somehow, you keep it at bay for the most part. At times it does strangle you, swallow you up and make it impossible for you to even remember joy – much less to choose to feel it. And still somehow, wobbly though it may be, you stand.

That alone is enough.

You have enough to face without also worrying about what you think you SHOULD be feeling or taking on your shoulders the responsibility of how strong you OUGHT to be, for the sake of those who are watching. We who read your blog come here because in some small way we want to be able to walk this road with you.

You touch our lives in so many ways, many of which you might never realize. Don’t make an assessment of your impact, or lack thereof, without taking into account the fact that you just don’t know everyone’s hearts. How can you know all the ways that your particular story has brought solace? What about all those other parents who feel just as angry and afraid and unremittingly sad and whose feelings you, as a writer, are giving a voice to? What about helping them to feel that they’re not unnatural or bad parents or bad people for feeling that way?

Don’t compare yourself to anyone else because, even if their situation is similar… no one else wears your shoes. Don’t belittle yourself for your emotions and reactions because, seriously, can you ever imagine a scenario in which you’d be patting yourself on the back for being such a hero? And do not – under any circumstances – give up on your dreams for Bennett.

No one else will dream better dreams for him, no one else will work harder than you to make them a reality. Having those dreams is not the same as living in denial or not being willing to make lemonade. Those dreams are the only thing that will pull you and your family forward.

Ultimately, nothing that anyone can say is going to make you “snap out of it.” You’re right in recognizing that you need help in dealing with something this huge.

Hey...I haven't blogged since Christmas, so I have you beat...and then it was just pictures posted...Not necessarily because I am in an unusually low place...Just because there has been no change in my son, and I hate to have to work so hard at saying those words..."no change"...

I sometimes try the trick of speaking or writing positively in order to FEEL more positive...Sometimes it works...Sometimes it doesn't...If it doesn't, I feel like such a fake...

I, too, wish I had the anecdote for the depression we SN parents feel...I think it just waxes and wanes with me...Right now, I'm feeling it more because of additional issues I think (the ex back in jail for the 4th time for non-p'ment for Colby, etc.)...

I CAN tell you that the thing that helped get me through the MOST were my fellow SN moms whose kids went to school w/my son....Their support "normalized" me...I think this blog can serve as the same to you...As well as any parents you might meet when Bennett starts his new school....

After 25 years, Holland still sucks....It will ALWAYS suck....I never wanted to go there either....But I am here, and it is what it is....

But I also can ALSO tell you that it DOES get better...Somehow and some way...I PROMISE...

I can't blame you for where you are, mentally. But it is truly awesome that Bennett got into the school. That is EXACTLY the type of place he needs to be. It will give him the best chance of overcoming his obstacles. Connor went to a special pre-school at age 2.5 And now, at age 6, he's doing so well he'll probably need NO THERAPY anymore. Sure, he's got his quirks, and his "not quite normal things". He could probably give Bennett a run on his major meltdowns, but he's succeeding. Same with Austin. He'll always need some type of help in school, but he's succeeding. I wasn't in such a different place than you when my kids were young, but 4+ years down the road, look where I am. Never count your kids out!!

Do you read Cami's blog? She just posted (after like 5 months!) and has a great comparison of where Cami was 2 years ago to where she is now. Bennet now and Cami then are two very similar kids. Just a little more hope to share.

Missed you. Your brutal honesty is a wonderful thing. Your Mom is somthing else...you share the gift of insight.This isn't over...I hate that for you, but am hopeful for Bennett. No one can know who he is becomming.

Ya know, I felt the same way you do about Marissa starting Pre-K to receive OT and Speech. While I was glad, if you can call it that, that she was getting the help she needed to catch up to other kids her age, I was pretty upset at the fact that she needed that help to begin with. I felt like I had failed to teach her the basics such as language and jumping off chairs....

Yes, I'm serious! The evaluators wanted her to jump off of a chair and when she refused they kind of looked at my husband and I with the 'wtf, why won't she do it' look on their faces....And unfortunately, I had to explain to adults that we don't allow her to jump off of or on furniture so she is only following our rules. And they STILL marked that against her. That was one thing that really pissed me off....

Anyway, so in regards to the special school for Bennett, I completely get how you feel about it. As for how you feel, I'd have to say that Ken, in no way, do I see you as mediocre in any way. You have dealt with SO freaking much just in the last year alone that you have every right to be depressed about all that has gone on. Just as you were learning to get on with those seizures, Bennett was presented with an opportunity of a lifetime to have those seizures cut out, literally. It's a lot to take in. No one expects you to be Mr. Happy now...not after all that has happened leading up to this point. I pray that you will find the courage, if that's what is needed, to seek the help that you already know that you need. Bennett has a ton of courage, and I'm sure he doesn't get it all from Jen. You have made some really tough decisions, and that my friend, takes courage.

As for poor Carter....Strep is a miserable thing to have. I once had it for 2 months straight! Talk about being miserable! Ugh...and that rash! Holy shit batman! I find it quite amazing that all these illnesses that ran amok way back when are making a comeback. We've had scarlet fever and whooping cough scares at school here.....Whooping cough scares me like crap. The cough just is horrible. They sound like a seal barking!! No lie either! Hope that Carter is feeling better now. All I can say for the rash is a baking soda bath, but I'm sure you and Jen got that covered. And LOTS of calamine lotion! They make it clear now so he doesn't have to be pink!!! *smile*

So anywho....I hope things turn around for you all soon. Bennett will start making more progress I'm sure once he's in a daily therapy setting. And once he starts.....watch out! There will be plenty then to find your happiness in. Until then, keep doing what you are doing. No one is judging you. Sending lots of mental hugs your way.....

Sorry pal. You have no sole ownership of anger. Some things in life just suck, sometimes life just sucks. And sometimes it just goes on and on. I am not even blogging about the fact that three days ago I blew a disk in my back (L4-5) and have been bedridden since then. Try being a single dad with a kid like this and bedridden. My point? Not at all that I have it worse, I DO NOT, just different. But DO NOT think you are alone in your anger or you are any different than the rest of us.

People tell me I that they cannot complain to me about their life, etc. That is BS. We all have our limits, the things that make us cry, our problems are ours, theirs are theirs. You are hurting right now, that is all that matters. Either let it out in this blog, start an anonymous one if that works for you, or just punch the wall. But understand, it does not make you any different, less or a jackass.

"I don't know if what I am experiencing is 'normal' for a 42 year old man in this situation or if I am just a Class A Jackass." I vote for neither.

My last long term relationship was with a Dutch woman. Holland may suck, but some of the women are great! But as for this incarnation of Holland, hell, I'm on the first train I can find out of here.

This was a tough one, Ken. Reading how hard this has been on you. I'm hoping you've found your happy nugget to chomp on since this post.

And, by the way, I don't think it's possible for any of us living this life to always be positive. We will ALL have our dark moments/days/months...I've cycled through them like you wouldn't believe. But, I refuse to let this own me anymore. It kills me, but I can't give up hope or I have nothing.